Amanda M. Gutierrez
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View article: Equity and Inclusion in Assessing Hereditary Cancer Risk: Insights From Excluded Communities, Structured Interviews, and Population Genetics
Equity and Inclusion in Assessing Hereditary Cancer Risk: Insights From Excluded Communities, Structured Interviews, and Population Genetics Open
Including underrepresented population groups in databases and initiatives integral to assessing hereditary cancer risk presents several challenges. Data and knowledge from genome-wide association studies (GWASs) and clinical genomics are b…
View article: Fresh takes on five health data sharing domains: Quality, privacy, equity, incentives, and sustainability
Fresh takes on five health data sharing domains: Quality, privacy, equity, incentives, and sustainability Open
As entities around the world invest in repositories and other infrastructure to facilitate health data sharing, scalable solutions to data sharing challenges are needed. We conducted semi-structured interviews with 24 experts to explore vi…
View article: Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients' Participation in Genomic Research
Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients' Participation in Genomic Research Open
Purpose: With increased use of genomic testing in cancer research and clinical care, it is important to understand the perspectives and decision-making preferences of adolescents and young adults (AYAs) with cancer and their …
View article: Parents’ decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project
Parents’ decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project Open
View article: Key drivers of family-level utility of pediatric genomic sequencing: a qualitative analysis to support preference research
Key drivers of family-level utility of pediatric genomic sequencing: a qualitative analysis to support preference research Open
View article: Spanish-Language Communication of COVID-19 Information Across US Local Health Department Websites
Spanish-Language Communication of COVID-19 Information Across US Local Health Department Websites Open
View article: Key drivers of family-level utility of pediatric genomic sequencing: A qualitative analysis to support preference research
Key drivers of family-level utility of pediatric genomic sequencing: A qualitative analysis to support preference research Open
Given that pediatric genomic sequencing (GS) may have implications for the health and well-being of both the child and family, a clearer understanding of the key drivers of the utility of GS from the family perspective is needed. The purpo…
View article: Creating Accessible Spanish Language Materials for Clinical Sequencing Evidence-Generating Research Consortium Genomic Projects: Challenges and Lessons Learned
Creating Accessible Spanish Language Materials for Clinical Sequencing Evidence-Generating Research Consortium Genomic Projects: Challenges and Lessons Learned Open
Aim: To increase Spanish speakers' representation in genomics research, accessible study materials on genetic topics must be made available in Spanish. Materials & methods: The Clinical Sequencing Evidence-Generating Research…
View article: Psychosocial Effect of Newborn Genomic Sequencing on Families in the BabySeq Project
Psychosocial Effect of Newborn Genomic Sequencing on Families in the BabySeq Project Open
ClinicalTrials.gov Identifier: NCT02422511.
View article: Psychological Distress Among the U.S. General Population During the COVID-19 Pandemic
Psychological Distress Among the U.S. General Population During the COVID-19 Pandemic Open
The COVID-19 pandemic is taking a significant global toll on emotional well-being, but evidence of mental health impacts in the United States remains limited. In April 2020, we conducted an exploratory survey of U.S. residents to understan…
View article: Pediatric Oncologists’ Experiences Returning and Incorporating Genomic Sequencing Results into Cancer Care
Pediatric Oncologists’ Experiences Returning and Incorporating Genomic Sequencing Results into Cancer Care Open
Pediatric oncologists’ perspectives around returning and incorporating tumor and germline genomic sequencing (GS) results into cancer care are not well-described. To inform optimization of cancer genomics communication, we assessed oncolog…
View article: Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium
Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium Open
Introduction: Ensuring equitable access to health care is a widely agreed-upon goal in medicine, yet access to care is a multidimensional concept that is difficult to measure. Although frameworks exist to evaluate access to care generally,…
View article: Quantifying Downstream Healthcare Utilization in Studies of Genomic Testing
Quantifying Downstream Healthcare Utilization in Studies of Genomic Testing Open
View article: Responsibility, culpability, and parental views on genomic testing for seriously ill children
Responsibility, culpability, and parental views on genomic testing for seriously ill children Open
View article: Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project
Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project Open
BACKGROUND AND OBJECTIVES: There is interest in applying genomic sequencing (GS) to newborns’ clinical care. Here we explore parents’ and clinicians’ attitudes toward and perceptions of the risks, benefits, and utility of newborn GS compar…
View article: Agents of empathy: How medical interpreters bridge sociocultural gaps in genomic sequencing disclosures with Spanish-speaking families
Agents of empathy: How medical interpreters bridge sociocultural gaps in genomic sequencing disclosures with Spanish-speaking families Open
View article: Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project
Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project Open
View article: Portero Versus Portador: Spanish Interpretation of Genomic Terminology During Whole Exome Sequencing Results Disclosure
Portero Versus Portador: Spanish Interpretation of Genomic Terminology During Whole Exome Sequencing Results Disclosure Open
Modifications to genomic terminology made during interpretation highlight the need to standardize bilingual genomic lexicons. We recommend Spanish terms that can be used to refer to genomic concepts.
View article: Do privacy and security regulations need a status update? Perspectives from an intergenerational survey
Do privacy and security regulations need a status update? Perspectives from an intergenerational survey Open
Though Millennials reported lower levels of concern about privacy and security, this was not related to internet or social media behaviors, and majorities within all generations reported concern about both the privacy and security of their…
View article: Cysteine mutagenesis improves the production without abrogating antigenicity of a recombinant protein vaccine candidate for human chagas disease
Cysteine mutagenesis improves the production without abrogating antigenicity of a recombinant protein vaccine candidate for human chagas disease Open
A therapeutic vaccine for human Chagas disease is under development by the Sabin Vaccine Institute Product Development Partnership. The aim of the vaccine is to significantly reduce the parasite burden of Trypanosoma cruzi in humans, eithe…